Fighting for Indonesia’s Mentally Ill, and Counting Toilets as Progress

Image

Nova Riyanti Yusuf, a novelist, mental health advocate and former member of Parliament, at the Yayasan Galuh Rehabilitation Center in Bekasi, West Java, Indonesia.CreditCreditKemal Jufri for The New York Times

By Jon Emont

Oct. 21, 2016

BEKASI, Indonesia — Spike heels clacking on the concrete floor of the patients’ cells, Nova Riyanti Yusuf strode grandly into the Yayasan Galuh Rehabilitation Center. As she reached the bottom floor, dozens of patients circled around her, curious and confused. One man appeared to be having an episode, continually introducing himself by new names and cackling with laughter.

Ms. Nova smiled at the patients, but her attention was elsewhere, with the center’s attendants.

“Who provides their medication?” she asked.

“Social services, ma’am,” said Ajat Sujrajat, a lead nurse.

“And who covers maintenance?”

“The funding is never certain, it comes from all over,” Mr. Ajat answered.

The room stank of urine, and as many as 40 patients were crowded into a large, mud-caked cell at the center, in the Jakarta suburb of Bekasi. Her inspection finished, Ms. Nova, a novelist, mental health advocate and former member of Parliament, gave a personal donation to the center and sat down on a bench outside to summarize her findings.

“The facilities are much better maintained than last year,” she said, pointing toward the bathroom. “There are toilets over there, so they aren’t just using a gutter anymore.”

Standards are low for Indonesia’s underfunded mental health system, where the patients are held in group cells and it is still common for supervisors to chain hard-to-manage patients to the bars.

The government estimates that as many as 19,000 mentally ill people are kept in chains, and a recent Human Rights Watch report documented numerous cases of electroconvulsive shock therapy delivered to patients without their consent — or anesthesia.

“Not every center works out like this,” Ms. Nova said, noting that chaining was barred at Yayasan Galuh three years ago.

Whatever improvements that have come to the mental health system in this nation of 255 million are largely the result of Ms. Nova’s efforts. In 2009, Ms. Nova, a psychiatrist by training, ran for Parliament with the single goal of writing and passing a bill to organize a national mental health system.

The need was clear.

Indonesia devotes less than 1 percent of its total health budget to mental health, uncommonly low even compared with other lower middle-income countries. Ms. Nova said it can be a struggle to persuade Health Ministry officials to devote more money to mental health, given other priorities, like treating the steadily rising number of cardiovascular and smoking-related illnesses.

During her time in Parliament, Ms. Nova worked to convince lawmakers of the dire situation of the mental health system. She led lawmakers on a trip to Lombok, an underdeveloped island east of Bali, where the mentally ill were chained to sheds by family members who did not know what else to do with them.

“The male parliamentarians were so eager to remove the person from his chains,” she remembered. But then “the family began crying. After he was released the family didn’t know what came next.”

The point, she explained to her colleagues, was that there was no clear next step, as Indonesia did not have an established system for mental health care.

One persistent problem is the lack of trained psychiatrists. There are about 700 trained psychiatrists in Indonesia, roughly one for every 350,000 citizens. Even the better facilities, like Yayasan Galuh, are rarely run by highly trained professionals, but instead by nurses or community members.

Three years ago psychiatrists from the nearby University of Indonesia developed a partnership with the center; they prescribed medication to patients, trained the nursing staff and enforced injunctions forbidding the chaining of patients.

Ms. Nova’s mental health bill sought to get around the lack of trained psychiatrists by expanding training for nurses and community health workers so they could conduct screenings for mental illness, with only the most serious conditions referred to psychiatrists.

By the time her term finished, in 2014, Ms. Nova had succeeded in navigating Indonesia’s topsy-turvy politics — bucking her party’s leadership, enduring sexist attacks and efforts to intimidate her — and passing the mental health law.

“In Indonesia if you’re in politics and you’re single and you’re female, you’re very prone to being slandered,” she said. “Because I was very independent and hard-working, and possibly annoying because I am very pushy and I know what I want and I don’t take no for an answer, so I’m an easy target for that.”

“She’s an extraordinary operator,” said Harry Minas, the director of the University of Melbourne’s Center for International Mental Health, adding that it was a major accomplishment for Ms. Nova just to establish the blueprints for a mental health system in Indonesia.

But after she lost her seat, Ms. Nova’s challenge now is to ensure that the government follows through with the legislation.

Born into a wealthy Muslim banking family in 1977 in Palu, a small town in remote Sulawesi Province, Ms. Nova dreamed of a career as a novelist.

But her family told her it was dangerous to try to be an author under the repressive Suharto government.

She turned to psychiatry, which seemed like a safer way to get into characters’ heads. But in 1998, as she was turning 21 and enrolled in medical school, President Suharto was forced to step down. Ms. Nova started writing, adopting the pen name NoRiYu.

She published her first novel, “Gods and Goddesses,” in 2003 and followed it with the best-selling “Libido Junkie: A Memoir for the Radicals” in 2005, joining a vanguard of Indonesian women whose work was called “fragrant literature,” for their vivid depictions of female lust, and — almost as daring — women who were postponing marriage and seeking high-powered careers.

The literature spoke to a new ideal for contemporary womanhood in the heady early days of Indonesian democracy, different from the buttoned-up conservatism of the Suharto government and the conservative Islamism that has become steadily more entrenched during the democratic era.

Ms. Nova, who dresses glamorously in skintight patterned pants and stiletto heels, was an in-demand writer and television personality, writing columns for Indonesian Playboy and film scripts.

But she continued to pursue psychiatry. Having a close relative with a serious psychiatric disorder led her to think about the deficiencies of the mental health system.

“There is always something weighing on your mind when your family member is suffering from mental illness,” she said, noting that few families can afford the high-quality care that hers could. “I can’t imagine what it’s like for people who don’t have the same support,” she said.

After losing her seat in Parliament, Ms. Nova received a fellowship at Harvard, and is now pursuing a Ph.D. in public health at the University of Indonesia. She sees patients and continues to consult with lawmakers on efforts to carry out the mental health legislation.

But progress is slow, and she is growing pessimistic about the prospects for transforming the system.

At Yayasan Galuh, Ms. Nova was approached by Tika, a 22-year-old woman who has been hearing voices since high school.

Tika said that medication helped her recover, but that she would rather stay at the center and work as an attendant than go home. “They all want to come here because there’s no stigma here,” Ms. Nova said.

In her vision of a better place for patients, cells would become wards, sleeping mats would become beds.

“This one can be a model,” she said. “This can be a success story.”

A version of this article appears in print on , on Page A5 of the New York edition with the headline: Freeing Mentally Ill of Stigma and Chains. Order Reprints | Today’s Paper | Subscribe